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Funding Boost to Carry Out Clinical Trial for Duchenne Muscular Dystrophy Research


Duchenne Muscular Dystrophy (DMD) is a recessive form of muscular dystrophy that is known to affect about 1 in every 3,600 boys worldwide. The condition leads to muscle degeneration and is caused by a gene mutation in the human X chromosome. Because of the progressive nature of Duchenne Muscular Dystrophy, most sufferers will need to use a wheelchair by the time they are twelve years of age.


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Although DMD is relatively common when compared to some other genetic conditions, a meeting between the Duchenne Children’s Trust and Wigan based charity Joining Jack highlighted the fact that leading UK clinics were finding themselves unable to carry out trials due to the lack of nurses and doctors.

The Newcastle Plan

To this end, the Newcastle Plan was born. The result of a major meeting held in Newcastle and involving leading researchers and medics, the Plan is a joint strategy with both short and long term goals. The main aim of the plan is to make sure that all promising clinical trials are actually carried out by, in the short term, increasing capacity in specialist muscular dystrophy clinics and over time also developing more robust infrastructure to support development.

Successful clinical trials are dependent on having the right professionals in place, and although pharmaceutical consulting companies such as can help to identify capable clinical trial assistants, research associates and data managers, the funding also has to be available for medical and non medical team members.

Joining Jack, a charity set up by the parents of Jack Johnson, an eight-year-old boy diagnosed with Duchenne Muscular Dystrophy in 2011, recently raised an impressive £174,000, which will go towards funding a doctor focused on carrying out clinical trials for a period of two years. According to mum, Alex Johnson, some of the money will also go towards paying for a physiotherapist who will be on hand to conduct physiotherapy assessments of the children taking part in the trials.

Clinical Trials Across England

As well as the contribution from Joining Jack, other organisations are also contributing funds. The money will be shared across three specialist clinics in England – Alder Hay Children’s hospital in Liverpool, The John Walton Muscular Dystrophy Research Centre located in Newcastle University, and Great Ormond Street Hospital, London.